“I think there has to be a mutual respect for there to be value”: Evaluating patient engagement in a national clinical trial on de-implementation of low value care

Research Involvement and Engagement

Research

Holly Etchegary¹  Jeremy M. Grimshaw²  Stefanie Linklater²  Andrea M. Patey²  Erin Gionet³  D.’Arcy Duquette⁴  Vanessa Francis⁴  Gloria Wilkinson⁴ 

[1] Clinical Epidemiology Program, Faculty of Medicine, Patient Engagement Lead, NL SUPPORT, CIHR-SPOR, Craig L. Dobbin Centre for Genetics, Memorial University, 300 Price Phillip Parkway, Rm 4M210, A1B 3V6, St. John’s, NL, Canada;Department of Medicine, Centre for Implementation Research, Ottawa Hospital Research Institute, University of Ottawa, Ottawa, Canada;Owerko Centre, Alberta Children’s Hospital Research Institute, University of Calgary, Calgary, Canada;Patient Partnership Council of the De-Implementing Wisely Research Group, Calgary, Canada;

关键词: Patient engagement;    Evaluation;    De-implementation;    Low value care;    Trial;    Choosing Wisely;   

DOI  :  10.1186/s40900-023-00483-w

 received in 2023-06-12, accepted in 2023-08-11,  发布年份 2023

来源: Springer

【 摘 要 】

BackgroundThe evaluation of patient engagement in research is understudied and under-reported, making it difficult to know what engagement strategies work best and when. We provide the results of an evaluation of patient engagement in a large Canadian research program focused on the de-implementation of low-value care. We aimed to evaluate the experience and impact of patient engagement in the study.MethodsAn online cross-sectional survey was administered using Microsoft Forms to (1) researchers and study staff and (2) patient partners. The survey was developed following iterative reviews by the project’s patient partnership council and evaluation committee. Survey content areas included opinions on patient engagement to date, including challenges to engagement and suggestions for improvement. Patient partners also evaluated the partnership council. Descriptive statistics including counts and percentages described Likert scale survey items, while open comments were analyzed using descriptive content analysis.ResultsThe survey response rate was 46% (17/37). There were positive attitudes about the value of patient engagement in this project. There was also a high degree of willingness to be involved with patient engagement in future projects, whether as a patient partner or as a researcher including patients on the research team. Most patient partners felt their contributions to the project were valued by researchers and study research staff. Open comments revealed that a co-design approach and full inclusion on the research team were integral to demonstrating the value of patient partner input. Areas for improvement included more frequent and ongoing communication among all team members, as well as earlier training about patient engagement, particularly addressing role expectations and role clarity.ConclusionsOur data revealed that despite some challenges, team members recognized the value of patient engagement in research and agreed project decisions had been impacted by patient partner input. Ongoing communication was highlighted as an area for improvement, as well as earlier training and ongoing support for all team members, but particularly researchers and study staff. In response to evaluation data, the team has reinstated a quarterly newsletter and plans to use specific patient engagement planning templates across study sites for all project activities. These tools should help make expectations clear for all team members and contribute to a positive patient engagement experience. Findings can inform patient engagement planning and evaluation for other health research projects.

【 授权许可】

CC BY   
© BioMed Central Ltd., part of Springer Nature 2023

【 图 表 】

12888_2023_5124_Article_IEq2.gif

Fig. 6